Connect info@sarcoma.org.uk sarcoma.org.uk
The bone & soft tissue cancer charity
Summer 2017
One man: 2,000 miles Richard Dunwoody’s trek across Japan for his nephew
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London Marathon 2017
Take a bow, Team Sarcoma, you’re our heroes
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Ruth Thomas
A sarcoma researcher who wants to make a difference
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The Big Picnic
Join us for Sarcoma UK’s biggest and busiest Awareness Week yet
Sarcoma UK’s key facts
Sarcoma UK is the only cancer charity in the UK focusing on all types of sarcoma. Our mission is to amplify sarcoma awareness, inspire involvement, and fund ground-breaking research to transform the lives of everyone affected by sarcoma. Sarcoma UK works with patients, carers, supporters, health professionals and researchers to drive awareness of sarcoma, promote early diagnosis and improve patient experience. Sarcoma UK has pledged to invest over £3million into sarcoma research by 2020 with the aim of finding effective treatment for the disease within the next 10 years. Sarcoma UK is the only UK charity providing personal support and expert information on sarcoma. We have a national Support Line, call 0808 801 0401 or email supportline@sarcoma.org.uk. Sarcoma UK provides education and training for GPs to help them recognise the symptoms of sarcoma.
About sarcoma
• Sarcoma is cancer. It can develop anywhere in the body • 10 people are diagnosed with sarcoma every day in the UK • Sarcoma is cancer of the bone or soft tissue • A key symptom of sarcoma is a lump that is increasing in size, often quickly • Sarcoma is one of the hardest cancers to diagnose. People visit their GP more times than those with any other form of cancer before being diagnosed with sarcoma
• Early diagnosis could increase survival by 20% • People with sarcoma tend to be younger than most people with cancer. 16% of sarcomas are diagnosed in people under 30, compared to only 2% of all other cancers
The most common sarcoma sub-types are: Soft tissue sarcomas • Leiomyosarcoma
• Fibroblastic sarcoma • Liposarcoma • Gastrointestinal stromal tumour (GIST) • Kaposi’s sarcoma (KS) • Angiosarcoma • Malignant peripheral nerve sheath tumour (MPNST) • Synovial sarcoma • Rhabdomyosarcoma Bone sarcomas • Chondrosarcoma
F
irst, I would like to personally congratulate each and every person who has ever raised funds for Sarcoma UK. In this issue, we feature fundraisers who have achieved incredible things for the charity – check out just some of the incredible feats on pages 4 and 5. We also celebrate our super-human London Marathon runners on pages 6 and 7 – our largest team yet raised more than £135,000! We caught up with a selection of runners at the party we threw for them to celebrate their success. Not forgetting of course, our intrepid adventurer Richard Dunwoody, who is trekking across Japan as I type this letter… read more on page 8. Ever wondered how someone becomes a PhD cancer researcher after starting out as an accountant? We went up to Sheffield University to find more about Sarcoma UKfunded researcher, Ruth Thomas. On page 10, she reveals what motivates her and how she chose to specialise in sarcoma. We’re also proud to launch Leave a Lasting Legacy: our guide to help answer questions and provide useful information for anyone considering leaving a gift in their will to Sarcoma UK. A gift in your will can ensure that people affected by sarcoma carry on receiving the support and information they need. (Read more on page 5 and on our website.) If this issue has inspired you to help raise awareness and get involved, turn to page 14 where we reveal what we’re planning for the biggest event in our calendar – Sarcoma Awareness Week from 3-9 July. Enjoy reading our updates and I hope the personal stories in this issue will inspire you.
• Osteosarcoma • Ewing’s sarcoma
Lindsey Bennister Chief Executive
• Chordoma
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@sarcoma_uk Connect
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@sarcoma_uk
Sarcoma UK sarcoma.org.uk
Support
Sarcoma UK’s Support Line Not everyone understands sarcoma. We do. Our Support Line is here for everyone affected by sarcoma. Meet Helen Stradling, Clinical Nurse Specialist and Support Line Lead…
“I
am a qualified nurse with an interest in cancer. In 2010, I became Sarcoma Advanced Nurse Practitioner and I have worked with Sarcoma UK for many years. I used to work on an Orthopaedic Oncology ward, where bone and soft tissue patients were cared for. I hold qualifications in both Orthopaedic and Oncology nursing and undertook a sarcoma module at the Royal Orthopaedic Hospital in Birmingham. My knowledge of bone sarcoma nursing grew all the time and I became the first Oxford Bone and Soft Tissue Clinical Nurse Specialist (CNS) in 2005. “I decided that I wanted to become a cancer CNS when one of my very close friends passed away from cancer when she was 23. I was in my third year of nurse training and seeing what a difference her CNS care made helped me make my decision. “I ensure the Support Line always has someone at the end of a phone or email during opening hours. I cover two of the Support Line days myself, and enjoy talking to people who call and answering emails that come through daily – you can talk to us about anything that is worrying you. I understand that any cancer diagnosis is hard, but particularly a rare form of cancer – you may never have heard of sarcoma before. That is why we are here, to support you through diagnosis and beyond. “The Support Line isn’t just here for patients, it is here for everyone affected by sarcoma – whether a carer, a relative, a health professional or someone worried about a friend. The Support Line acts as a hub of information, and we can let you know about anything from treatment and its effects to finding your nearest Sarcoma Specialist Centre. We also speak to people who may have only just discovered a lump and are not sure what to do. “There is no silly question, if you’re worried about something, just call or email. We know that you may not always feel like you can ask everything in a hospital appointment. Hundreds of people already use our Support Line, and I just want to continue growing the service to support as many people as possible.”
Sarcoma
Support Line
0808 801 0401
supportline@sarcoma.org.uk sarcoma.org.uk
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Photo by Heather Shuker
UK
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Fundraising
Exciting news and upcoming events From flowers in our name to the Great North Run, there’s lots going on in the Sarcoma UK fundraising world and beyond. Ablaze with Light – in memory of William Petter Friends and family of William Petter celebrated the launch of Ablaze with Light, an album put together by his family of the music the renowned choral musician composed. The Rose Singers, a group of singers hand-picked by William before he passed away, put on a spectacular performance in the equally magnificent surroundings of Temple Church, London. Over 250 copies of the special album were sold, raising £2,500 for Sarcoma UK. The album is now available to purchase with all proceeds being donated to Sarcoma UK: sarcoma.org.uk/events/Ablaze
Bath Half Marathon Seven amazing fundraisers took on the Bath Half in March, raising over £1,700 for the sarcoma community. Geoff McCarthy was even interviewed by his local news broadcaster, helping to really boost awareness in the community!
Saracens vs Northampton Saints Louise Ellison and Geoffrey McCarthy at the Bath Half
Long-term supporters Lu15 Fundraising (a fundraising group set up in memory of Luis Ghaut) nominated Sarcoma UK as one of Northampton Saints Rugby Club’s charities of the match versus Saracens. Despite a narrow defeat in the closing minutes of the game, it was a brilliant day with staff and volunteers collecting donations and talking with both sets of fans about sarcoma, to raise awareness. Northampton Saints also donated a proportion of ticket sales to the charity and England rugby star Luther Burrell wore the charity’s logo on his shirt for the match.
Sarcoma UK in bloom We are delighted to announce that a new fuchsia named ‘Sarcoma UK’ will be launched at this year’s RHS Chelsea Flower Show. Produced by retired painter and decorator Ian Strawson, who was diagnosed with sarcoma in 2015, and his partner Bonita Hesketh, this pink beauty is now available to pre-order.
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Save a space in your border, and download your order form at sarcoma.org.uk/news/fuchsia
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Fundraising
Fundraising calendar Five challenges Liam Joyce wasn’t content with taking on one challenge, he took on five! Over the course of three months, he completed: a 10K, a sprint triathlon, a 200km non-stop cycle, a half marathon, an Olympic triathlon, and finishing in style with a half ironman. Phew! He raised over £3,500, all in support of his cousin, Olly. Read more on his justgiving page: justgiving.com/ fundraising/ Liam-Joyce5
Be part of our future with a gift in your will Our work is made possible by the generosity of our supporters, and a gift in your will could make a huge difference and help us continue supporting the sarcoma community for years to come. We understand that your legacy is a deeply personal decision. If you are thinking about whether to leave a gift in your will to Sarcoma UK, our new guide provides insight into the positive impact your gift will have on the sarcoma community and leaving a lasting legacy. Download the guide on our website sarcoma.org.uk/legacy or call 020 7250 8271 for further information.
sarcoma.org.uk
Sunday 30 July Prudential RideLondon-Surrey 100 Team Sarcoma is once again peddling the streets of London and taking on the Surrey hills, all in the name of charity. Come out and cheer them on along the 100-mile route. Sunday 10 September Great North Run For the first time ever, Sarcoma UK will be at the Great North Run. We’re ecstatic to have been able to award places to our supporters, and will be heading up to cheer them around the world-famous course. Got your own place in the race? Join the team! You’ll receive all the same support, materials and, of course, your very own Sarcoma UK running vest. We also need volunteers to help the runners as they brave the challenge. Join us at the Sarcoma UK cheering station, or set up your own cheering point. Sunday 8 October Royal Parks Half Marathon We’re back at the greenest half marathon in London, the Royal Parks Half. As our runners prepare to take on this challenge, we’re looking for help to ensure they have the best support on the course, so please get in touch! 25 March 2018 London Landmarks Half Marathon A new, quirky half marathon is arriving on the scene in spring 2018. The London Landmarks Half is the only half marathon to take you through the streets of Westminster. The route will take runners past some of the most famous, oldest and weirdest landmarks in London and promises to be a spectacular experience for everyone involved. For more details on the upcoming challenges, visit our website or contact Kat at fundraising@sarcoma.org.uk
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Fundraising
Take a bow, Team Sarcoma London Marathon runners It was cheers all round on Sunday 23 April as our 45 runners tackled the 26.2 miles of the London Marathon, raising an incredible combined total of more than £135,000 to help transform the landscape for everyone affected by sarcoma.
T
he Sarcoma UK cheering squad was out in force, at miles 12 and 25, to cheer on our biggest ever team of runners who completed the marathon on a beautiful sunny Sunday. Whether they were a seasoned runner or jogging newbie, each and every member of Team Sarcoma ran for a reason, and smashed their fundraising goal as they covered those infamous 26.2 miles. Of course, we also threw them a party to celebrate their grit and determination, where we caught up with a selection of them to find out how they felt post-marathon… And a big thank you also goes out to the volunteers who got up in the early hours on a Sunday morning to cheer our runners on and ensure that they were well looked after postrace. You made the day all the more special.
Think you’ve got what it takes?
Photos by Ian Randall and Sam Rockman
Team Sarcoma 2017 raised over £135,000. This transformative amount will bring about more research, more support and more information for everyone affected by sarcoma.
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You, too, can bring about enormous change by joining Team Sarcoma for the 2018 Virgin Money London Marathon. Every pound raised will help our sarcoma researchers as they pave the way for better treatments. With every step you run, you’ll be ensuring anyone affected by sarcoma can get personal support and expert information from our Support Line nurses. Join the team for this incredible challenge and transform lives.
Applications are now open: 020 7250 8271 sarcoma.org.uk/running
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Fundraising Research Samuel Sunderland, 26 “My dad’s girlfriend Kerry Buckland lost her brother to sarcoma, and I watched her run the marathon last year – it inspired me to apply. Running really has changed my life for the better, and I will definitely keep on training, even now the marathon is over.”
Thanks so much to our incredible Sarcoma UK runners: Guy Allwork James Arrowsmith James Baston-Pitt Mark Barratt Marc Bozdogan Gina Browse Luke Costello Charlie Davison Linzi Deane Katie Dewland Matthew Foligno Jamie Frampton Steven Gabb Callum Grummit Genny Hart Kevin Heskett Oliver Hunt Andy Hopwood Terry Johnson Sara Kelly Mark Kingston Gina Long Lisa Lumley Jack Matthews Natalie McClements Steven Miller Iain Murray Amy Nethercott Laura Osman Lyndsey O’Neil Kathryn Palmer Richard Pepper Alison Pullen Nikki Reeves Lauren Sanders Asa Scott Allison Semikin Sam Sunderland Leanne Spencer Jack Smith Lesley Smith Sarah Szopa Beth Turrell Winan van Houdt Daniel Vitelli
sarcoma.org.uk
Laura Osman, 35 “I ran the marathon for my mum, who was diagnosed four years ago on Christmas Eve; and I really wanted to help raise money for research and support. Mum turned 60 last year, it was a special year, as we didn’t know if she would still be here. It was actually Mum who asked me if I wanted a challenge, and said I should run the marathon for Sarcoma UK. Fundraising became a family affair, and we organised lots of events and coffee mornings. I am a nurse myself, and I have never treated anyone with sarcoma, so I know how important raising awareness of this rare form of cancer is.”
Linzi Deane, 26 “I told my story in the last issue of Connect, and I am so touched that readers sponsored me. It means a lot, and I want to say thanks to everyone who read my story. This is my sister-inlaw’s baby and youngest member of my cheer squad in her Sarcoma UK babygro! The pain of running was over for me in 4 hours 44 mins but the chemo, radiotherapy and operations involved in treatment for those who are diagnosed with sarcoma can last for years – they are the true heroes.” You can read Linzi’s reasons for running in the winter issue of Connect: sarcoma.org.uk/connectwinter-201617
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Fundraising
2,000 miles across Ja On 26 February, former Champion Jockey Richard Dunwoody MBE embarked on the longest fundraising challenge of his life. His aim was to walk the length of Japan, covering 2,000 miles – that’s 20 miles a day until around 10 June. As this issue goes to print, Richard has just crossed from Honshu to Hokkaido having covered over 1,200 miles. He’s fundraising for Sarcoma UK because his 21-year-old nephew George has sarcoma. This is George’s story...
“M
y family moved from Windsor to Pangbourne when I was a teenager, so I was forced to change schools. I was apprehensive as it meant attending a naval college, and I thought I would hate that kind of environment. But actually, it was the reason I got into rowing, and I realised I was really good at it. It changed my life. “My childhood dream was to become a vet – I love animals – so I chose A-levels around that: business studies, biology and all four sciences, but I ended up dropping the sciences and decided that just wasn’t the route for me. To be honest, in my last year of A-levels I mostly just rowed – I loved it and was really progressing and improving. At the time, I had aspirations of rowing for Team GB. “After school, I got selected to row for GB. That was when I was 18. I came fourth in the junior world championships and that is still one
of the highlights of my life so far. I chose to do Construction Project Management at Oxford Brookes University. I picked Oxford because of the rowing scene. “I was diagnosed two weeks into my second year. I woke up one morning to find a lump in my scrotum. It felt like it had grown overnight, although I am sure that probably wasn’t the case. That morning, I got up, got dressed and went straight to the uni doctor, as they have a walk-in clinic. The first person I saw wasn’t qualified to tell me what was wrong so sent me to someone higher up. I had a scan the following week. “Its all a blur, I kept trying to convince myself nothing was wrong. But, the scan results came back two weeks later, and I was told I had paratesticular embryonal rhabdomyosarcoma and I was referred to a specialist sarcoma unit. I was put on three drugs, the chemo was so strong – nine cycles, in three-week courses.
George pictured with his uncle Richard who is trekking across Japan for Sarcoma UK
Richard’s reason for walking
“This is my first challenge for seven years – and I am doing it to raise money for Sarcoma UK. The charity is of personal relevance as my nephew George, 21, who represented Great Britain at the Junior World Rowing Championships in 2014, is still fighting the disease, having undergone both chemotherapy and proton therapy in the past 18 months.”
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You can support Richard through his fundraising page which has now reached more than £13k: justgiving.com/ fundraising/Japan4SarcomaUK Connect
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Fundraising Research
apan for Sarcoma UK expectations of what my body’s capable of, I now get tired walking upstairs, and I have a lot less energy but that is to be expected.
Some photographs from Richard’s Japanese adventure
“Luckily, I was only a couple of weeks into term at university, which meant I could put my course on pause so I could concentrate on getting better. I moved back to my parents’ and they were so supportive. I would spend three days in hospital, then the week after I would be wiped out and have to recover. My uni and rowing friends were great too, they would come hang out and keep me company. I adapted to life as a cancer patient – you have to. I would watch racing on TV while I was going through chemo, anything to keep my mind occupied. “I had my last round of chemo for that course in the USA in June 2016 where I also had proton beam sarcoma.org.uk
therapy. It was in Florida so once that was over we had a bit of a holiday. I thought it would all be over when I got back, but doctors wanted me to do maintenance chemo until January this year. But January came and went and they thought I was coping well with it so now want to carry on until July. I think it’s because of the level of fitness I was at before I got diagnosed. “Now, it’s manageable, and I am back at uni. I have three weeks on, and one off. I always have chemo on Fridays so I am feeling slightly better by Monday, then I have lectures on Tuesdays, Wednesdays and Thursdays. It’s not ideal but it is manageable. I have to alter my
“I have many hopes for the future. I want to do some work for charity and, maybe next year, I’d like to get back into rowing – perhaps I will see if I am eligible for the Paralympics. I want to finish my course, too. “I have been watching my uncle Richard’s progress as he treks across Japan. I spoke to him when he was in Moroyose. We FaceTimed, as his daughter Millie was staying at our house – she is 18 months old – while his partner Olivia went out to visit him and walk with him. In fact, Millie was born around the time I was diagnosed, and I adore spending time with her. “My advice to other sarcoma patients is to stay positive, although I know that is easier said than done. Time passes quickly, so make the most of the good days when you have them! And talk to people, share your problems, you’re not alone. You know how the saying goes: a problem shared is a problem halved.” Download information on proton beam therapy at: sarcoma.org.uk/protonbeam-therapy-factsheet Connect
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Research
“I do this because I want to make a difference to people’s lives” From accountant to PhD student, meet Ruth Thomas, 34, a Sarcoma UKfunded researcher who really wants to help the lives of those affected by sarcoma. What is your research about? My project is following up on clinical findings that suggest a particular subset of cancer patients might respond well to cancer drugs that are aimed at limiting the tumour’s blood supply. These drugs have revolutionised treatment for many patients; however they can cause side effects and may not be effective in all patients. The aim of my research is to investigate whether particular ‘flags’ on a patient’s cells or in their bloodstream can be tested to identify patients who will respond to this form of treatment.
How did you get into this area? Any reason for choosing sarcoma? My original plan at the start of my undergraduate degree was to do research into either cystic fibrosis or multiple sclerosis. However, as a result of a year-long placement developing a new cancer drug at pharmaceutical company GlaxoSmithKline, my focus changed and I became interested in the treatment of cancer and the idea of personalised medicine. When I saw this PhD opportunity advertised it was just perfect, it encompassed everything that I enjoyed about lab work and was in an area that “I use I think is so exciting and important.
Photos by Matt Brown
the analogy of a
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Soft tissue sarcoma is sandcastle to explain to my notoriously difficult to treat and currently the treatment 10-year-old niece what a cell options available are in the human body is. Cells are limited. Our laboratory has developed a cell line that the basic building blocks of can be used to investigate all living things. The human whether cancer therapies that are already licensed in body is made up of other cancers may be beneficial trillions of them.” to certain groups of soft tissue sarcoma patients. Connect
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Research
Have you always worked in science? No, in a previous life I was an accountant! When I left school at 16, I had no idea what I wanted to do. I went to sixth form and started A-levels, I hated them and after three months I quit. On visiting the local careers office, they showed me a list of apprenticeships that I could do and I chose accountancy. I worked in an accounts practice for the first five years of my career before being offered a job as a finance manager of a multi-million pound leisure company. I stayed there for five years before I decided that it was not a job I wanted to do for the rest of my life. I upped sticks and moved to Sheffield; at the age of 27 I sold my house and car to study Biomedical Sciences at Sheffield Hallam University and moved into halls of residence!
What inspires you about science? Science is everything! It is all around us in everything we do and we know so little about it. There is so much to learn and this excites me!
What motivates you? If my research means that just one less person in the world does not go through the pain of losing their mum,
I started my PhD. So far I have learned how to lay laminate flooring, wire in sockets and switches, plus I now have a dazzling array of power tools! I also volunteer at Weston Park Hospital on Friday mornings in the Chemotherapy Day Case Unit. When I can I go back to the east coast to visit my family and get run ragged by my nieces and nephews.
Your work must be very intense, how do you relax and switch off your mind? To switch off I go to the gym or out for a run, I put my headphones in, turn up the volume and have that hour or so to myself. To relax I crochet, craft and bake – not very rock and roll I know!
dad, sister, daughter or whoever they love then I will have succeeded. I do this because I want to make a difference to people’s lives.
“Science is everything. It is What’s next? That is the question all all around us in PhD students dread! In all everything we do and honesty, I have no idea where we know so little about my research will take me. I aim to stay in the cancer research it. There is so much field, whether it be here in Sheffield or further afield. to learn.”
What do you get up to in your spare time?
Primarily, I am a mum to my two beautiful cats, Lily (Potter) and Velma (Dink Duley). Currently I am doing up the house I bought when
View the project Ruth has been working on under lead researcher Dr Kanthou on our website, sarcoma.org.uk/research/ funded-projects/kanthou
Thanks to your donations, we have awarded £225,000 to fund five Basic Science research grants Basic Science aims to find out how something works. It usually happens in a laboratory and involves carrying out experiments. An example of basic science research is looking at how a cell changes when it’s exposed to different kinds of external influences or what happens to biological tissue when treated with a new medicine. We are delighted to fund our first Sayako Grace Robinson Studentship – an annual award of a PhD studentship in sarcoma basic science. Dr Paul Huang, Team Leader in the Division of Cancer Biology at the Institute of Cancer Research, has been awarded £119,960 to fund a PhD student to deliver a project: “Defining the mechanisms of pazopanib and regorafenib resistance in soft tissue sarcoma”. This project aims to discover how the body develops resistance to two chemotherapy drugs used in the treatment of soft tissue sarcoma. This research could help doctors test patients before chemotherapy to check the patient will respond to the treatment. It will also increase knowledge of how to overcome drug resistance in sarcoma. View all of Sarcoma UK’s research grants sarcoma.org.uk/research/funded-projects Read Sayako’s story sarcoma.org.uk/research/apply-funding/sayako sarcoma.org.uk
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Information
Immunotherapy Immunotherapy is a new and developing treatment that aims to use the immune system to fight cancer. Our Head of Information & Support, Claire Kelleher, explains more. What is the immune system? It’s a network of cells, tissues, and organs that protect the body against illness and infection. Some cells in the immune system can also identify and fight cancer. If the immune system recognises cancer cells as different from normal cells, it can kill them. Unfortunately, this is not always enough to get rid of cancer. We know this because people with healthy immune systems still get cancer. Some cancerous cells may look like a normal cell so the immune system does not detect them. Cancer can also suppress the immune system, making it less effective in fighting the cancer overall.
What is immunotherapy? A relatively new form of treatment that uses the body’s immune system to treat cancer. Some immunotherapies boost the immune system to work harder so it can fight the cancer. Other treatments involve giving drugs that contain man-made components of the immune system that can identify cancerous cells and attack them.
The main immunotherapy treatments are:
•
Monoclonal antibodies These are proteins that are made in the laboratory. They bind with a substance in the cancer cell and block signals that tell the cancer to grow.
• Checkpoint inhibitors
Some proteins in the immune system work as checkpoints or brakes on the immune response. Inhibiting or taking the brakes off these checkpoints gives a stronger immune response. This helps the immune system identify and attack cancer cells.
• Cancer vaccines
These can help treat cancer by getting the immune system to identify cancerous cells and destroy them.
Some of these treatments are in the very early stages of development but they do hold hope for the future.
How can this help sarcoma patients? Immunotherapy is a relatively new way to treat cancer. There are currently only six active immunotherapy
treatments and only two of these can treat sarcoma. These are:
• Denosumab – used to treat •
a type of bone sarcoma called osteosarcoma Olaratumab – used to treat people with soft tissue sarcoma that cannot be cured with surgery or radiotherapy
Both these immunotherapies use monoclonal antibodies (man-made versions of immune system proteins) that have been specifically designed and made in laboratories to target these types of sarcoma.
Challenge for researchers? There are over 100 different subtypes of sarcoma. They all look different under a microscope and behave differently to treatment. The big challenge is identifying the right treatment approach for each subtype of sarcoma. This will take time as researchers try to find ways to predict whether certain therapies will be effective in treating specific subtypes of sarcoma.
The future There is a potential for immunotherapy to be an effective way of treating sarcoma. Recent research has shown promising results that could lead to treatment options in the near future. Sarcoma researchers are continuing to test new treatments and find out the best ways to benefit sarcoma patients.
Sarcoma
UK
Support Line
0808 801 0401
supportline@sarcoma.org.uk
Contact us! If you have any questions about immunotherapy, contact our Support Line
Photo by Matt Brown
• Our support line is independent and confidential • We believe no question is a silly question • We lend a listening ear • We can point you in the
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right direction
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Personal story
What’s in my hospital bag? Worried about what to pack for your hospital trip? We caught up with social media expert and blogger Sarah Baker, 47, to find out what things make her stay that little bit more comfortable. Phone For all the reasons you love your mobile, you’ll love it ten times more in hospital.
A mirror There won’t be one by your bed. You’ll have constant bed head. Ergo, a mirror. Ditto, your hairbrush! Cereal Bring in some cereal you love to get those taste buds going again. You might not like what’s on the hospital trolley…
Something sentimental I always carried a crystal from a friend and a Japanese friendship doll from my daughters as reminders of their love and support.
Notebook and pencil case You’ll lie in bed hoping to remember to ask your partner/mum/sister to bring in some more clean socks, but if your memory is like mine you might need some help – so write it all down in a notebook. Choose a cheery colour to brighten your day.
Book That book you’ve been meaning to finish for ages, now’s your time to finish it, as you’ll be waiting around lots. I would add that I found my concentration very poor immediately after my operation, so some more frivolous reading matter that you can scan or just take in the pictures works well. Ask friends to bring magazines.
Toiletries Things that will make you feel better and smell good are important. Dry shampoo and your fave perfume will help to make you feel human. Hand cream will instantly take the hospital scent away. Mints For me, getting out of bed wasn’t an option for the first five days post-op, the odd mint for the surprise visitor will have you feeling more confident when you can’t dash to the bathroom.
You can follow Sarah on Instagram @sarahbakerblogs and her blog sarahbakerblogs.wordpress.com where she talks about dealing with her diagnosis and treatment of myxoid liposarcoma. Visit sarcoma.org.uk/sarcoma-types/ liposarcoma for more information. sarcoma.org.uk
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Sarcoma Awareness Week, 3-9 July 2017
Join in The Big Picnic Sarcoma Awareness Week, 3-9 July, ties in with international sarcoma awareness month in July. There are many ways you can get involved whether you’re a patient, carer, family, friend or supporter – there is something for everybody!
R
school, indoors or at a local club or community space.
egister to host a picnic in your community to raise vital funds for sarcoma research and support.
Here’s some great advice and tips to get you started:
Plan your event
• Pick a location. There are so
many options. You could hold your picnic in a local park, at your workplace, in your garden, at your
#TheBigPicnic
Getting involved is easy! Simply pick a venue, invite your family and friends, organise some sandwiches, and ask for donations. We’ll send you your Big Picnic Pack full of tips and advice, balloons, banners and even a picnic blanket.
• Plan what to serve at your
picnic. You might want to prepare your own picnic snacks, buy ready-made goodies or hold a potluck picnic.
Invite your guests
• Invite your friends, family, colleagues and neighbours. • Send round an email invitation. • Spread the word through social media, using #TheBigPicnic.
Ask for donations Ask your picnic guests to make a donation. You might want to suggest a donation of £5 or set your own amount. Don’t forget to have your donation box handy – this will be in your picnic pack.
Add some fun!
Support Line on Tour Our Support Line Nurses are visiting clinics of some sarcoma specialist centres across the UK, so that patients have the chance to speak to our experts face to face. Sarcoma UK podcas ts Tune in to listen to our sarcoma podcas t series. Each day during Sarcoma Awareness Week, we’ll be releasing a podcas t about sarcoma. We’ll be tackling issues covering diagnosis, treatment and care. Details on our website: sarcoma.org.uk/get-involved/SAW
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• Bake sale Sell your delicious bakes to your hungry picnic guests • Jelly bean jar Hold a classic • • •
‘Guess how many beans in the jar’ competition Raffle Sell tickets on the day to win bakes, or ask local businesses to donate prizes Face painting corner The kids will love it! Prosecco picnic Add some glamour to your event! Who could resist a glass of bubbly for an extra donation?
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Patron Richard Whitehead MBE
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a Archer
sarcoma.org.uk Registered as
The Big Picnic Pack includes a limited edition poster especially designed by artist Magda Archer. sarcoma.org.uk
fundraising@ sarcoma.org.uk 020 7250 8271
Founder Roger Wilson CBE If you no longer wish to receive Connect, contact head office at info@sarcoma.org.uk or phone 020 7250 8271 Disclaimer: Please note that personal views and opinions expressed are not necessarily endorsed by Sarcoma UK. The material in this publication is provided for personal, noncommercial, educational and informational purposes only and does not constitute a recommendation or endorsement with respect to any company, medical professional or product. Sarcoma UK makes no representations and specifically disclaims all warranties, expressed, implied or statutory, regarding the accuracy, timeliness, completeness, merchantability or fitness for any particular purpose of any material contained in this or attached document/s. The information contained in Connect is not intended to replace advice or medical care from your doctor. No part of this publication may be reproduced in any way without prior permission from Sarcoma UK.
Connect
• Sarcoma UK • Summer 20 17
15
Until this morning, Hannah had never heard the word sarcoma. This morning was when a doctor told her she has sarcoma. There are so many questions Hannah didn’t have a chance to ask. And she is scared. She needs to talk to somebody who understands sarcoma, now. Sarcoma UK’s Support Line Nurses are here for every person affected by sarcoma.
Will you donate £15 a month to give people like Hannah somebody to talk to?
I’d like every patient affected by sarcoma to get the support they need. To register, please fill out both forms. Form A should be returned directly to your bank (or you may be able to do this online), and Form B to us at: Sarcoma UK, 49-51 East Road, London, N1 6AH. Form B notifies us that you have set up a standing order gift and allows us, if applicable, to claim Gift Aid from your donations.
Please make a first payment of £
Address:
on
and thereafter a similar payment *monthly/quarterly/annually Postcode
Account name:
*please delete as appropriate
until *further notice /the following date
Sort code:
Payee: Sarcoma UK Sort code: 40-52-40 Account no: 00019763 Bank: CAF Bank Ltd Branch: 25 Kings Hill Avenue, West Malling, Kent ME19 4JQ
Account no:
Signed
Name:
Form B
I wish to set up a regular Standing Order in favour of Sarcoma UK.
Bank name
Home address:
Title
First name
Surname
Date
I have set up a regular donation to Sarcoma UK by Standing Order of £
per *month/quarter/year
*please delete as appropriate
Telephone:
I want to Gift Aid this donation and any donations I make in the future or have made in the past 4 years to Sarcoma UK. I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. Please notify the charity if you: want to cancel this declaration, change your name or home address, no longer pay sufficient tax on your income and/or capital gains. If you pay income tax at the higher or additional rate and want to receive additional tax relief due to you, you must include all your Gift Aid donations on your Self-Assessment tax return, or ask HM Revenue & Customs to adjust your tax code.
Email:
Signed
Postcode:
Date
Code: SUC17/2
Form A
To the Manager: